In a May 8, 2017, letter to the Office of the National Coordinator for Health Information Technology (ONC), HIMSS and the Personal Connected Health Alliance (PCHAlliance) offered comments to the ONC in response to the Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data (PGHD) in Care Delivery and Research through 2024 Draft White Paper.
HIMSS and PCHAlliance voiced support the work that ONC is undertaking to describe key opportunities and challenges for realizing the potential of PGHD use and offering relevant enabling actions that could further enhance PGHD capture, use, and sharing for improved health care delivery and research in the United States.
In addition, HIMSS and PCHAlliance supported the idea of using the final paper to position PGHD to have a greater future impact on care delivery and research by first enhancing its clinical purpose and further incorporating it into the clinician workflow. The draft paper does make the point that PGHD has the potential to improve practitioner productivity by augmenting traditional patient questionnaires and review of systems with sophisticated integrated data collection through new personal health devices as well as legacy medical devices. While this idea could help give PGHD a clinical purpose, the HIMSS-PCHA comment letter offered specific goals around this concept.
Moreover, the letter calls on ONC to create an appendix that lists common, existing PGHD-associated standards to ensure that the community has a resource that would be helpful to the field as it advances. This appendix should also include a level-setting discussion for the entire community with an environmental assessment of existing standards for applicability to the capture, use, and sharing of PGHD, focused on available standards (Continua guidelines, IEEE standards, Integrating the Healthcare Enterprise (IHE) profiles, etc.), to create a baseline for what is available, what gaps there are, and what still needs to be developed or modified for PGHD applicability. HIMSS and PCHAlliance expressed support for a public discussion and assessment of relevant standards to push the entire PGHD effort forward.